Spinal Myoclonus and Palatal Myoclonus???
 

Hi I have both Palatal Myoclonus (only 1 in 2 million people have this) and Spinal Myoclonus (only 1 in 3 million people have this). I am searching and really hoping that there is someone else out there with these conditions with whom I can get some support and relate to about these difficult conditions. Please write! Thanks so much. :) Topsie

palatal myoclonus
 

Hi Topsie,
I also have palatal myoclonus and I have it for about 9 years now. It took me years to find out what was wrong with me and I still am working on finding a medicine to easy it up. I get frequent ear infections as well and the doctors seem to struggle to tell me why or if they are related. I found out today that they are not b/c i have also have TMJ. I am going back in 2 weeks to see what new medicine they are going to try me on. I understand exactly what you are going through. I am so glad that i know that someone else has it b/c i think sometimes people thought i was crazy when i told them i constantly hear a clicking noise. But i do constantly do hear the noise and i have been on numerous medicines, where some ease it up but nothing so far has made it stop.

Thanks,

zoes _mom

Hi Their,

Do you have a heart murmur?

Just a thought, have you had a strep throat infection in the last couple years or so???

I just hope you find an MD to get to the root of your problem. Much Love, Roz

Thanks for your message
 

HI Zoes mom
I am so glad to know that someone else has this condition. I have constant ear popping not clicking. My ears have been popping anywhere from 5 pops per minute to at the worst 61 pops per minute for the last 6 years. I have tried countless medications without success. I had botox shots in my palate and 1 of the 4 times was successful. I go to a nuerologist every month. I also have Spinal Myoclonus which causes the spasming of my neck, shoulders and arms. This has been devastating. Recently I have been trying Chinese herbal med drinks 2 times a day and very painful accupuncture 2 times a week. There is some relief in the popping with accupuncture. - When done correctly. The person needs to know the connection of the body with your palate and ears etc or it can be very bad- I had that experience as well. I don't suggest Neurontin as that only made me gain tons of weight. I am currently taking a small bit of Valium and Toporol at night for these myoclonus conditions. I hope you find this information helpful. I would really like to keep in contact so please feel free to write. Topsie :)

hi topsie and welcome

i was reading about your conditions and i am so sorry for your pain . you are welcome here anytime
i have tmj on both sides so i kinda know about the popping for sure. i hope that you can find some relife

-carrie

I was diagnosed with it last year. Basically, I get the crunching noises (rice krispies) in my middle ear and the plugged feeling that won't go away. Its extremely hard to treat. It started after my concussion in the Summer of 2005. I had a bit of luck with Effexor. My ear starting to unplug and stayed unplugged for a couple of hours after taking the medication, then it plugged up again. The medication hasn't worked since. I am hoping that it has something to do with migraines.

palatal myoclonus
 

Hello,
I have Palatal myoclonus. I would like to chat with anyone who has it. I gave up on drugs. I'm not going to have surgery, so that leaves Botox injections. I've found someone who has given this in the tensor veli palatini muscle to relieve vibrations of palate, and therefore the ear clicking. I had one injection, which didn't work, but now they know a bit more where to put it, so I'm going to have another. Kind of working up the nerve to do it.

Diana

HI
 

I get a pop-pop-popping in my ears all the time, something betwen popping and clicking it drives me nuts.. I always assumed I have water or air pressure in my ears.. goes on most all day, my docs always "tisked" over it and ignored it or looked in my ears and said they look fine, also my left jaw locks and clicks.. gets very painful when that side of my face flares or I eat a steak.

I just tend to ignore it all and chalk it up to more inevitable ills since.. unless.. is there something that can be done for it?
Silence would be good.

be well,
Sandra

Sandra, Have you talked to anyone about TMJ? Some of your symptoms sound a bit like that.

Hi Diana,
I was diagnosed with palatal myoclonus 12yrs ago. I hav constant clicking in both ears, which can be heard by other people. I hav been on rivitrol, epilim and tegretol medication, none of which worked.
In the last few months the clicking has been painfull and therefore I am now looking inot more treatment options. Im considering the botox injections but am a little worried about the side affects. Is it true your speech changes??
Also do you know anything about the drug Trihexphenidyl?
Renee

Hey there,

I don't have Spinal Myoclonus or Palatal Myoclonus but do have pretty bad myoclonic jerks in my left leg (the one with RSD).

The spasms first started after an ingrown toenail removal in April of last year. My Pain Management Doctor and Neurologist believe that the toenail removal somehow managed to harm my nerves and that is why I have the spasms.

The spasms come every few minutes and are really frustrating and can be very painful and embarrassing. When they come, my leg starts jerking around in the air uncontrolably and I get very bad cramp in my hip and lower back area.

My Neuro and PM Doc have tried lots of medications to get them to stop but none have really helped. I underwent an Intense Physical Therapy Program in July of last year and the PTs did lots of strengthening exercises using weights on my RSD leg and that helped a little but the spasms haven't gone completely.

I tend to find that the spasms get worse when I have done too much so always have to take things really easily and take lots of time to sit down and rest.

I'm sorry to hear that you are dealing with this also!:hug: Please know that I am here for you if you ever need to talk!!

Palatal Myoclonus and Spinal Myclonus
 

Hi Topsie,
Thanks for your post about these rare conditions. I currently have myoclonus and docs still have not given me an actual diagnosis. I have palatal myclonus/clicking and popping involuntary when I open my jaw slightly and when I lye down to sleep. I have involuntary movements of both legs, arms, fingers, shoulders when lying down while awake and when fall asleep they wake me up. I even went to the University neuro muscular disease dept. for evaluation and they only said yes we believe she has myoclonus but did not diagnose the cause! So now I must go back after waiting months for an appointment since my symptoms have continued to get worse. I have a really bad neck with spinal stenosis due to bad discs etc. as well as a tarlov cyst on the thoracic spine and a herniated lumbar disc. I even saw the neurosurgeons at the same University because my primary blamed my symptoms on my spine/neck injury but the neurosurgeon said my symptoms were not due to my spine but of course did not tell me what is causing the myoclonus and burning pain etc. I also have fibromyalgia so he tried to just blame it all on that and said I needed to try biofeedback or other treatments to help cope with chronic pain. I have had fibromyalgia for 15 years but all these other symptoms are new beginning in past few years after having worsening of my spine injuries due to a fall, had major surgery for vascular and neurogenic thoracic outlet syndrome and deep vein thrombosis in both shoulders and then was on multiple medications for almost two years. My current doc has taken me off of many meds to see if I am having med side effects causing the myoclonus but I still have it even off the meds. What type of doctor diagnosed your palatal myoclonus and spinal myoclonus and what diagnostic tests did they do for you? Any meds that have worked for you? I would like to be armed with information before my Neuro appt in March so it is not a waste of time and money. I am sure you understand how many docs a person with these symptoms can see and still not have a diagnosis! I am so sorry for your suffering these conditions and hope you have found treatment that has helped you. Thanks, Numbhands.:)

Hi Topsie, I had myclonic jerks after I got RSD following surgery. The are involuntary jerks, jolts of the nervous system related to the Limbic part of your brain. I had them at night too, go thru my body and raise my head right off the pillow. Even relaxing watching a movie, both legs would jerk around.
I saw a new Dr. a neurologist, psychiatrist, and pharmacologiist and still seeing him-6 years now. He raised my neurotin to 3200 mg. and that totally stopped them. I gained weight , which is a side effect. I asked him to go off of it and we gradually did about 2 years ago. I've just now had a couple of them at night.
I know they are scary, especially when they come while we are sound asleep. RSD affects the involuntary organs. Have you been checked for that?
We also have burning pain, blood pressures changes, memory problems, sometime grasping for words while talking. skin red dots or lesions. some joints can freeze up.
Glad you found some others here for support. Am very sorry you have this condition. Take care, loretta

I also have the same problem. The jerks and all could almost lift me off the bed at night. I've got the pain pump now and am on Daluidad. I told the drs about the jerks at last visit and they put me on Backlofin. My jerks have really gone down. I think they plan to up the dose when I go back in a couple of week, and I'm hoping that with the slight increase they will go away completely. They are down to a few jerks per hr. and they aren't anywhere near as severe as they were before the backlofin. (spelling is pretty bad lol). It seems to be the drug of choice for most ppl who have the jerks. We can get it in the pump instead of oral. I'm taking oral right now to make sure it works before we place it in the pump. SO far so good.

Mary

Sorry, I have had only one cup of coffee and my mind isn't awake yet.

palatal myoclonus
 

Renee,
Sorry I just noticed someone responded to my comment! Haven't been to this site for awhile, sorry. Yes I tried Trihexiphenidyl. It was awful. It didn't help. I tried Botox six times. It did affect my speech and swallowing for a few weeks but it didn't help my PM. The symptoms indicate that they've Botoxed the right place. Sometimes it works for PM and sometimes it doesn't. I worked up to 15 units and the ENT wouldn't try more. You've had it for quite sometime. I'm beginning to think mine is caused by a spinal problem. Degenerative Disk Disease. I also have lots of crunches in my neck that are quite loud and started the same time as PM. It was also the same time I had a rather aggressive spinal manipulation by a chiropractor.

Diana

spinal myoclonus
 

hey topsie i found this site through a friend, my husband has spinal myoclonus, its gr8 2 no that someone else out there that has it. My hubby feels quite isolated at times, he's in constant pain. I dont no wat urs is like but hubby is jerking and jumping almost all day even in his sleep, his arms also jump and he has just started doing this thing with his tongue and also grinding his teeth,anyway i could wobble on 4 ages about this condition its a horrible thing 2 have hope it helps a bit x sammisox